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Aim: To co-develop Caregiver Reported Outcome Domains (CRODs) towards a core outcome set (COS) for ichthyosis in clinical practice and service delivery. Background: Ichthyoses is an umbrella term for a group of over 20 rare, chronic, inflammatory skin diseases characterised by thickened, scaling and dry skin. It is a highly visual, life-limiting, incurable, often fatal disease, for which there is limited healthcare knowledge and few treatment options available to caregivers. Research emphasises that ichthyoses can exert a substantial burden of care, potentially impacting the quality of life for both those affected and their caregivers. Dermatology Life Quality Index (DLQI) scores place ichthyoses among the skin disorders with the most harmful impact on a patient's quality of life. Without curative intervention, the mainstay of life-long symptom management often remains the responsibility of the caregiver, often assuming nursing roles without prior training or appropriate information. Despite the known negative impacts on families and other informal caregivers, there are no robust, co-designed instruments to measure the needs of this population. This Core Outcome Set (COS) aimed to inform the development of appropriate ichthyosis caregiver outcome measurement and improve COS uptake. This COS uniquely invited experts by experience (caregivers and multi-disciplinary professional experts) to prospectively collaborate to co-develop a minimum set of caregiver reported outcome domains (CRODs) that measure relevant and suitable concepts of ichthyosis for clinical practice, service delivery and research. To promote content validity and improve rigour, outcome domains were identified using a hybrid of literature and qualitative feedback from ichthyosis caregivers. Consensus on the most important outcome domains was achieved using an international e-Delphi study, online anonymous qualitative feedback, statistical testing of the e-Delphi results and an online consensus discussion. Method: A sequential mixed method design, using a two-staged approach, was used to address the research question. The protocol for this COS evolved using public and patient involvement (PPI). An international multi-disciplinary expert group included clinical experts, patient caregivers, support group representatives, policy makers, researchers and service providers were recruited at the outset. Experts by experience, or caregivers, were recruited through medically recognised online international ichthyosis support groups. Stage 1: Item generation: I conducted a comprehensive systematic literature review to identify available psychosocial needs assessment tools, validated for use with caregivers of paediatric patients with dermatologic disease (registered on PROSPERO). Then, I carried out an international multi-method qualitative study using framework analysis with 39 caregivers across 4 continents. Stage 2: Item refinement: I undertook an international e-Delphi study approach involving international multi-disciplinary experts, and caregiver groups. The expert groups were asked to rate the importance of candidate outcome domains, and then the helpfulness of respective supports. Preliminary psychometric evaluation of the needs assessment tool for ichthyosis caregivers (NAT-IC) was also conduced. Analysis: In-depth interviews of caregivers were transcribed and explored using a thematic analysis. Qualitative feedback from expert groups were itemised for use in the scale development. I undertook inter-rater reliability between the professional and caregiver expert groups and psychometric analyses on the different subsections of the NAT-IC. Results: Study 1: Very few needs assessment tools were validated for use among caregivers of paediatric patients living with dermatologic disease. Ten disease-specific assessment tools and one dermatology-specific assessment tool were identified. With the exception of three domains (emotional, social and financial), none of the other twenty-eight domains identified in this review were reported in more than one tool. None of the included tools were available as a caregiver self-report e-tool, allowed for caregiver assessment of disease severity and/or flagging of caregiver vulnerability. The lack of caregiver assessment application in healthcare settings may be explained by poor content validity, the biomedical model of assessment reflected in existing tools, and/or the poor methodological properties of the included tools. Study 2: As the largest international qualitative study to explore the lived experience of ichthyosis caregivers to date, this study identified an entire constellation of supportive care needs, relevant along the entire care continuum for a representative group of caregivers and patients. Although the study confirmed the presence of the three most frequently reported outcome domains in the systematic review, this study led to the development of an additional fifteen meaningful outcome domains. Outcome domains were generated from the presence of supportive care needs arising from two overarching, yet often competing, themes relating to the provision of appropriate care for their affected child and addressing their own personal needs. Core areas of supportive care needs included: (i) information support (disease and care specific information, financial matters, practical supports, genetic diagnosis and counselling) (ii) education and training (formal disease recognition at national level, caregiver (self) identification, management of the psychosocial impact of ichthyosis on both the patient and caregiver, importance of positive language, appropriate healthcare expertise and effective communication) (iii) formal support (healthcare access, caregiver needs assessment, service delivery, formal disease recognition, shared-decision making, communication pathways, engagement with education and childcare sectors, relationships with healthcare professionals) (iv) informal support (social support networks including peer, family, online and societal) (v) physical health (vi) emotional health and (vii) the need to manage their own lives. When caregivers perceived a gap in the provision of healthcare and social care support, emotional distress was intensely amplified. This is the first qualitative study to propose a conceptual framework relating to the supportive care needs on the ichthyosis care continuum, with findings suggesting that the modification of any one element in our framework (demands and resources), through feedback loops, may result in a different bi-directional psychosocial impact for both the caregiver and the child. Additionally, key transition stages, positives of caregiving, coping strategies, helpful dermatological supports, impactful disease parameters and influencing factors potentially associated with severity and/or caregiver need were identified and may prove useful for understanding the triggers and barriers within the caregiver/healthcare dyad. Study 3. No significant difference was found between any of the severity groups (mild/ moderate/severe) and total need, implying that all caregivers of children living with ichthyosis should have their needs assessed in a timely and appropriate manner. The NAT-IC is the first comprehensive, online, self-report solution-focused model of dermatological caregiver assessment that can be used to directly assess unmet ichthyosis caregiver needs at both the problem and support level throughout the care continuum. The finalised NAT-IC contains seventeen 'core' outcome domains and is the first dermatological caregiver assessment to include a caregiver self-report perceived severity scale of impactful disease parameters (SPIS) as well as a screening section. Preliminary psychometric evaluation of the NAT-IC suggests a valid and reliable needs assessment e-tool that includes outcome domains that achieved positive consensus in the e-Delphi study and/or were significantly associated with a total severity and/or need score.

Adverse childhood experiences (ACEs) include 10 traumatic events of abuse, neglect, and household dysfunction that occur before 18 years of age. Adverse childhood experiences affect greater than 60% of the population, and approximately one in six individuals affirm that they have experienced four or more types of ACEs. They are associated with negative, long-term health outcomes in adults, including 9 out of the 10 leading causes of death in the United States (Centers for Disease Control and Prevention, n.d.; Felitti et al., 1998). The purpose of this evidence-based practice project was to implement a tailored, multicomponent intervention to mitigate the adverse health outcomes in adult survivors of ACEs. The project participants included 50 adult, primary care patients with an ACE score of one or greater at a Federally Qualified Health Center in West Michigan. A categorization tool was used to determine participants risk status (low, intermediate, or high risk). All levels of risk received ACE education and resilience interventions. Resilience interventions were individually tailored to strengthen social support and increase mindfulness practices. Intermediate and high-risk participants received an additional mental health intervention. A perceived stress scale (PSS) was administered at the time of intervention and at 12 weeks post-intervention. To determine the effectiveness of the interventions, a paired-samples t test was calculated to compare the mean intervention PSS to the mean post-intervention PSS. The mean intervention PSS was 21.09 (SD = 6.77), and the mean post-intervention PSS was 18.71 (SD = 8.22). A significant decrease from intervention PSS to post-intervention PSS was found (t (33) = 2.229, p = .033). In addition, 88.2% (n =30) of participants reported progress on one or more of the interventions. The results indicated that a tailored, multicomponent intervention reduced perceived stress and facilitated the implementation of resiliency and mental health interventions.

While the slow death of retail is unraveling in cities nationwide, some local shopping areas still serve an important community value. Main street retail areas are venues for commercial activity and anchor the neighborhood’s economic environment (Mehta & Bosson, 2010). The types of businesses that are found in these spaces indicate sociodemographic aspects of their nearby neighborhoods. Main streets can be homes to a variety of businesses. From a health perspective, businesses that are considered to be “health-harming” are often concentrated in underprivileged neighborhoods and are associated with higher rates of chronic disease (Cummins et al., 2007). Planning tools and policies permit such retail businesses to exist in these spaces, potentially causing adverse health impacts to the residents. Pinpointing the specific mechanisms that create health-promoting or health-harming conditions in these retail corridors s is crucial to understanding retail’s impact on communities’ health. Developing a scale for scoring business types helps us understand community-specific health outcomes for the neighborhoods near retail corridors; it could also reveal the disparate quality of life impacts that exist in different commercial corridors. With this in mind, the research that follows will examine health disparities within the broader scope of planning and policy practices. To this end, this project aims to explore the extent to which the concentration of healthy and unhealthy establishments along Los Angeles’s Main streets and retail corridors relate to the sociodemographic characteristics of their adjacent neighborhoods. Questions that frame this research are: Do high ranking businesses appear around places where people tend to be healthier because of socio-economic status? Do high ranking businesses relate to better health for the adjacent population? Methods used in this research include the mapping of Main street retail areas, deploying an index that scores the extent to which the businesses encourage health-promoting behavior, and the analysis of Main street community health outcomes. From the scoring of Main streets across the city, four sites are chosen (based on their median household income and the overall score of their retail environments) to provide a more detailed scope of the built and social environment of these streets. As seen in the research that follows, businesses in areas with higher ranking scores are tied to healthier outcomes. Deliverables of this project include the use of an instrument that measures retail’s association with health outcomes and built environment characteristics in the hopes that it can be used for future planning. This research can be used to inform policies surrounding more inclusive built environments and public spaces.

Stroke is the fifth leading cause of death and leading cause of long-term disability in the United States. Stroke patients often get readmitted to the hospital due to various reasons. Effective patient education is a critical part of preventing hospital readmission. Several studies revealed that patient education is more effective with individualized approach than generalized passive approach. A recent survey by the Joint Commission also recommended Central Maine Medical Center to offer stroke patients individualized education that is more appropriate and effective for patients. Average Americans read at eighth grade level but health information is usually offered at college level. According to the American Heart Association, patient education can’t be one-size-fits-all; health information should be tailored to a patient’s ability to understand and keep them motivated to maintain their health and reduce their health related risk factors. Recommendations were prepared based on literature review and feedback from CMMC nurses who are involved in educating stroke patients and researchers who have worked on this topic. Thus recommendations were prepared with three focuses: to individualize current education material used by CMMC for stroke patient, to improve health literacy of CMMC’s current education material for stroke patients, and to implement evidence-based individualized patient education in future.

Abstract: Acute myocardial infarction (AMI) is a global health concern. Despite of a reduction in incidence and mortality in the last several decades, AMI is still the leading cause of mortality and morbidity in many parts of the world, especially high income countries including Canada. Because of continuing advancement in AMI care practice and change in patient risk profiles, continuing benchmark of AMI care practice, health outcomes as well as resource use and costs is needed to inform health policy and quality improvement initiatives. We conducted four retrospective cohort studies using (1) the Canadian Institute for Health Information (CIHI) Discharge Abstract Database (DAD) which contains acute care inpatient abstracts in all Canadian provinces except for Quebec between April 2004 and March 2014 and (2) the province of Alberta inpatient, outpatient, practitioner claims, pharmaceutical information network, population registry and vital statistic databases between April 2004 and March 2016. We examined temporal trends and provincial variations in the use of reperfusion strategies and associated in-hospital mortality, cardiac care quality indicators, resource use and health care costs of patients with AMI (International Classification of Diseases, 10th revision, codes I21 and I22). Canadian Classification of Health Interventions was used to identify relevant reperfusion and cardiac procedures, Alberta Interactive Health Data Application was used to provide dollar values for inpatient and outpatient services and Alberta Drug Benefit List was used to provide drug price. Overall, there was a significant increase in the use of contemporary primary percutaneous coronary intervention (PCI) during the study period but there was generally no change in health outcomes, except for a modest improvement in 30-day in-hospital mortality and 30-day readmission after coronary artery bypass grafting (CABG). The stable trend may reflect an avoided mortality and readmission when accounting for increased risk burden among patients with AMI over time. In addition, there were large variations in both the use of revascularization strategies and health outcomes across Canadian provinces. Patients with ST-segment elevation MI receiving fibrinolysis and followed by PCI in a systematic manner had the best outcomes compared with patients who underwent other alternative reperfusion strategies. The health care costs for AMI are high. However, the annual costs for AMI decreased during the study period, possibly suggesting an efficiency improvement in AMI care. The combination of stable outcomes and decreased costs over time could indicate a success in AMI care in Canada. Resource use and costs in the long-term were modest compared with those during the first year after incident AMI. Hospitalization accounted for the largest share of total health care costs and the subgroup of non-ST-segment elevation MI patients appeared to be the biggest resource use and cost driver. The large variation in care practice and outcomes across Canadian provinces could be a potential area for a pan-Canadian collaboration and coordination initiative to improve AMI care in Canada. In addition, a set of standard quality indicators specifically for AMI care should be developed. The methodology and findings in this thesis could be a starting point for a larger discussion on development of such a set of national quality indicators.

Abstract: Background: Venous thromboembolism (VTE), comprises both deep vein thrombosis (DVT) and pulmonary embolism (PE). It is a common acute cardiovascular event associated with increased long-term morbidity, disability, all-cause mortality, and high rates of recurrence. Major advances in diagnosis, prophylaxis, and treatment over the past 3-decades have likely changed its clinical epidemiology. However, there are little published data describing contemporary, population-based, trends in VTE epidemiology. Objectives: To examine recent trends in the epidemiology of clinically recognized VTE and assess the disease burden in the Canadian province of Alberta. Methods: Initially, we developed and validated a VTE case identifying algorithm using a combination of International Classification of Diseases (ICD) diagnostic codes and a VTE related imaging procedure codes against patient charts. Then, two retrospective cohort studies based on linkage of administrative health databases in Alberta, Canada, provided estimates of VTE incidence and case fatality over the past decade. Also, we investigated the effect of cancer on overall, short- and long-term mortality in a cohort of consecutive incident PE patients. Poisson regression and Cox’s proportional hazard models were used in the multivariate analysis. Results: 1361 patients were used for the validation of the case-definition. The sensitivity and specificity of our algorithm for identifying patients with VTE using administrative data is 75% (95% CI: 69.18-80.22) and 93.78% (92.19-95.13), respectively. Subsequently, we identified 31,656 cases of acute symptomatic VTE between April 1, 2002, and March 31, 2012. The age and sex adjusted incidence rate of VTE was 1.38 (95% CI: 1.37, 1.40) per 1000 person-years. For pulmonary embolism it was 0.38 (95% CI: 0.36, 0.40) per 1000 person-years and for deep vein thrombosis it was 1.0 (95% CI: 0.99, 1.1) per 1000 person-years. The adjusted model showed no significant change in the incidence of VTE during the study period. The 30-day case fatality rate of VTE was 2.0% (95% CI: 1.89, 2.21) and was almost doubled in patients with PE 3.9% (95% CI: 3.50-4.33). The 1-year case fatality was 9.2% (95% CI: 8.88-9.52) for VTE and 12.9% (95% CI: 12.2-13.6) for patients with PE. In patients with PE, The 1-year and 5-year survival probabilities were 61% (95% CI: 57-64) and 39% (95% CI: 36-43) in cancer-associated PE patients, 93% (95% CI: 92-94) and 80% (95% CI: 78-81) in provoked PE patients, and 94% (95% CI: 93-95) and 85% (95% CI: 83-87) in unprovoked PE patients, respectively. Compared to patients with unprovoked PE events both short-term and long-term survival in patients with cancer-associated PE have significantly higher observed risk of all-cause mortality in all age groups, P-value